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Progressed a bit

Everyday living
#1

Progressed from RRMS to SPMS - Please GOD, Life is a bitch and then you are DG with MS.

Promise you guys, I am coping well, but one Nuero apt. every twelve months, and one very overworked MS nurse every 4-6 months does not help. After 2 years of being registered with a new G.P. I was awaiting my first appointment (made three weeks ago, and they phoned at 8 this morning to cancel, and re-booked for 22nd Dec. just for me to air my views about the total lack of understanding. In two years, I have seen three times a locum, just to discuss and get the new prescriptions suggested by my Niuero.

Last month, sadly after almost a year without bladder problems, my Botox failed. Back to huge incontinence pads, 24/7, changing bedding almost twice nightly, washing two to three changes of clothes daily, I asked for a repeat prescription of Neditol and Betmiga which previously had been prescribed for several years, prior to Botox - no they made me make several trips to the Surgery before they agreed to give it to me again. I spent three weeks unable to almost leave home, as within 5-10 mins my pads were full and leaking.

I have made this apt. with my registered G.P. in order to say that I do not take all of my prescribed meds unless necessary, but when I have a problem, I really do need attention.

My G.P. practice have made it very clear that they will not see me if my problem is MS related, I must go to Nuero first. So in the last few months, I have started with the water curtains across my eyes. About six weeks ago, I woke up on the sofa in the middle of the afternoon with a complete numbness in my right arm. pins & needles, cramp etc. but sadly didn’t stop for a few days, seriously thought I had suffered some kind of stoke, but frightened to go to the G.P. as it could be MS related, so they would not help. I spoke to lovely Lisa, and she confirmed it was probably my MS moving on. So now dead left side as well as right, can’t use my walking stick in either hand.

So guys and dolls, the question is - how do I get my new overworked G.P. on my side. I think no more than four appointments in two years is not really pestering an overworked N.H.S. system.

I do not want to be a burden on anyone, but this situation is making me depressed, stay in bed a lot, cop out of the gym, don’t eat properly, as I am so fed up with bring ignored by one and all

Help please xxx

#2

hi maryrie

sorry that you are not getting the help that you need from your GP.

GPs are primary care providers and they should not exclude you because of your illness.

your ms nurse sounds a gem. would she write to your GP and ask them to keep an eye on you?

you sound like you are heading for depression without help from your doctor.

sorry my brain is on go-slow and i’m not making sense.

take care and treat yourself to a delicious meal.

carole x

#3

Maryrie,

Sorry to hear of your tough situation. None of us want to be a burden but you need some proper support. I think that your GP should try to help. It might actually be in the budgetary interest of the NHS in the long term. When I need to make things happen, I speak with my MS nurse who knows me well enough to work out when to make a fuss. Your GP should be there to fight your corner for your well being whether it is MS related or not. If your MS nurse is your preferred contact , get them on board to get you the help you deserve.

All the best and good luck and make a bit of a fuss.

Mick

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#4

Hello…oh you are having a rotten time and I feel for you.

You dont mention any home support…do you have a partner/friend/family who you can just tal to and get stuff off your chest?

I know this wouldnt make your medical problems any easier, but just talking face to face with someone who cares, helps me.

Also, have you thought about having a supra pubic catheter fitted? I`ve had mine 2.5 years and before that, life with wet nix, wet beds, piles of wet washing everywhere, hourly needs to pee and gigantic pads were really getting me down.

summat else…are you amnaging your personal care alright…apart from the obvious present matters I mean?

I ask because I`m in receipt of Direct Payments…this is an allowance which lets me employ carers to come get me up, showered, toileted every day and then they take me out twice a week.

This gives hubby a well earned break from looking after me 24/7. Oh they sleepover twice a week too.

Let me know if you need anymore info on this.

As regards your health issues and seeing doctors…not everything is down to your MS. It isnt that easy to get to see a neuro, as it is to see a GP.

much love Pollyxxx

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#5

Sounds a bit like my surgery. I think it’s because they feel out of their depth with long term neurological problems. OK with coughs and colds, nappy rash and ear stringing etc but a progressive neurological condition is a bit beyond them.

#6

It makes me wonder how on earth these GPs manage to complete forms with information requested by the DWP for ESA & PIP claims. If they won’t see you regarding your MS, then how can they possibly be expected to understand how it affects you on a daily basis. Obviously the same is true for any info provided by the GP to the council for blue badges, social services for care needs etc, etc.

If you have this sort of problem with you GP, try to get something in writing from them in which they make clear their lack of knowledge about you, your MS and how it affects you. You can then use it should you have to appeal.

Sue